Thursday, September 17, 2009

Well. I've decided to come out of hiding. I am going to post an actual picture of myself for my profile picture.First of all, this is the picture I chose for my Facebook profile -- I think it's a good idea to show that I am a happily married woman on a social networking site, don't you think?

Second, this is the picture I chose for my family blog. I think it shows my joie de vivre, kind of fun and sassy, like me. I really do love my family and my life.

Finally, in spite of protests from my vanity, this is the picture I am choosing for my CFS blog profile:

The reason I chose this picture is because CFS is not an invisible illness. It is visible in the dark circles and lines that cover my face. It is visible in my furrowed brow when I'm in pain. It is visible in my hunched shoulders. It is visible in my gait and pace when I walk. It is not an invisible illness.

I have a few theories on why people don't see my illness. First, I think that many people are too caught up in their own "invisible illness" to notice my pain and suffering. Life weighs heavily upon all of us from time to time. It is difficult, and sometimes frankly impossible, to notice others' pain when our burdens are overwhelming and hard to bear.

Second, I think that many people just can't stand the thought of a friend or loved one having to go through this ordeal. It is scary to think that I will never get better. I've dealt with this kind of denial. To not have "me" back again? Ever? Surely, that is not something I embraced easily. How can I expect the people I love to believe it? No, I forgive them for holding on to the belief that this has to be something else, something the doctors missed, something that can be cured.

Finally, I think that there are just some people who won't see because then it would prove them wrong. They would be forced to look in the mirror and see someone who judges harshly, who believes the worst in people. They would see dark holes where their compassion and humanity should be. It would be an ugly image staring back at them. I pity these people most of all.

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comments:

Oh, this is SO GOOD! Shelli, you are so insightful I needed to hear this today. It helps me to let go of my anger on this topic! I thought I had until someone told me that I was not getting well because I did not have a purpose in life anymore to drive me! My purpose was invisible to them along with my feelings I guess :) I am going to reference your post on my blog too....it is very helpufl and the more that can read it the better!!

Hi I popped by from Renee's blog. My ME/CFS was found to be lyme and now on long term antibiotics I am getting my life back.

Mine was a very visible illness sufferring with arthritis and muscle weakness was clear for my work colleagues to see yet still I got the same pathetic questions and statements. When I finally was no longer able to struggle in to my very part time job apart from the relief to conserve my energy which I am sure helped my immune system to fight it was also a relief not to have to answer all those awkward questions or put up with their strange looks and comments.

Your article was very well written and needs to be out there with so many others for people who don't have these illnesses to read.

And some people think they are doing you a favor by telling you how good you look!

You're right about CFS NOT being invisible. The people close to me can tell in an instant if I'm having a good day or a bad day. My mom says she can tell by my voice over the phone. And I recently dragged myself to a friend's party, and when we walked in, my friend looked closely at my face and said, "Are you feeling Ok tonight Sue? You look kind of tired." I wasn't at all offended - I really appreciated her noticing!

About Me

I am a 46 year old stay at home mom. I have been married since 1988 to the world's best husband. We have six wonderful children. My husband and I are starting our own small business together. I have had Chronic Fatigue Syndrome since about September 2006. It's such a strange disease (illness? condition? ailment?). I wanted to create a place where I could come and write about what it's like to deal with the challenges of living the CFS life. I honestly believe that sometime, somewhere, some doctor is going to magically tell me, "Oh, I know what this is!" and I will be cured. Until that time, I'm hoping to learn something about myself and maybe help others.